About Me

Lucy Watts MBE, MUniv, FRSA

Hello, my name is Lucy. I’m in my late 20s and I have a life-limiting illness and extremely complex medical needs.

I’m a prominent patient leader, disability activist, palliative care advocate and lived experience consultant, as well as being an entrepreneur with one business and one startup (albeit both on pause now due to my health change), a trainer, independent advocate, independent support broker and speaker. I Chair the Pathfinders Neuromuscular Alliance, am a Shadow Trustee for St Elizabeth Hospice and Patron of Arkbound.

I have influenced local and national policy in the UK, worked closely with the NHS, supported service development and improvement, worked with a number of charities. I have worked closely with the NHS as a “Patient Voice” volunteer or “Peer Leader”, working nationally and regionally, as a member of the NHS Assembly, a member of the NHS England Personalised Care Strategic Co-Production Group, sitting on the NHS England Personalised Care Organisational Development Board and being part of other boards and committees, including the End of Life Commissioning Board, the GP Contracts and Primary Care Networks Medicine Review Board, working with the East of England PHB Network, and others. I helped produce the first guidance on sexuality and young people with life-limiting conditions for hospices and other care providers. I have been a pioneer in patient involvement activities, developing different ways of engaging people to reach often unheard voices, through using digital technologies to reach patient groups including young people with life-limiting conditions and disabilities. I have done this for the Living Life To The Fullest research project, MAGICYL and DIGNITAL dignity therapy projects, the Open University Sexuality Alliance for whom I set up and run their Young People’s Advisory Group AdversiTeam. I have been running accessible focus groups, Twitter chats and using digital methods for research data collection. I also set up the unique international palliative care patient and carer advocacy network, Palliative Care Voices, in 2017. I have been privileged to have a personal friendship with, and influence on, the Director-General of the World Health Organisation, Dr Tedros, with whom I frequently liaise and have met with, and this contributed to a pioneering action by the WHO to commit civil society funding from the WHO to support palliative care and the communication by the WHO to governmental and society leaders to implore them to look at palliative care provision in their country, which came through a game-changing webinar in 2020. This is but a tiny snapshot of my work, work I long to get back to. 

I also do a lot of speaking, including a TEDx talk for TEDxNHS 2019, which can be watched by clicking here, speaking at local, regional and national events, and international events via video link or pre-recorded video. Many speech videos are available on YouTube or other platforms, including my YouTube which you can access by clicking here

I’ve been privileged to receive an MBE when I was 22 for services to young people with disabilities, an Honorary Masters Degree from the Open University, a fellowship of the Royal Society of Arts and a Digital Leader of the Year (2020) award, amongst others. In 2019 I was even named the 9th most influential disabled person in Britain in the Disability Power 100 List (as well as being listed in 2018 and 2020). However, it is not awards that give me satisfaction or joy; the doing of the work is what drives and motivates me, and the knowledge, when I reach the end of my life, that my life meant something and was worth living. 

I’ve known since my mid teens that my conditions would prematurely end my life – I am living far beyond my original prognosis, now over a decade of life I wasn’t expected to have. Whilst I don’t want to dwell on listing my diagnoses, I know often people want to understand this, so as an overview: I have an undiagnosed neuromuscular disease causing progressive muscle weakness, multi-system involvement and respiratory muscle weakness; a connective tissue disorder related to a COL1A1 mutation (which is likely a rare form of Ehlers-Danlos syndrome); Chronic Intestinal Pseudo Obstruction (CIPO), and multi-organ dysfunction and failure. My condition affects almost every organ and body system. My gastrointestinal tract has completely failed, meaning I depend on the nutritional equivalent of life support, artificial feeding into the bloodstream called Total Parenteral Nutrition (TPN) which is delivered through a line in my chest that sits just inside my heart, through which I also receive daily IV fluids and IV medication, and frequently, IV antibiotics (IV antibiotics are constant at the moment). I also have an Ileostomy, which is a stoma bag where the end of the small bowel is brought out onto the surface of my abdomen, and I also require a PEG (gastrostomy) tube to be on constant free drainage to drain acid and bile from my stomach. My bladder has failed completely and I have a Urostomy (Ileal Conduit) which completely bypasses my bladder, using a piece of bowel which has been cut free from the digestive tract to drain urine from my kidneys out onto a bag on the surface of my abdomen. My bladder is still left inside me, due to the poor chances of me surviving its removal, but this now means I have pyocystis, a pus filled bladder, due to the severity of the existing infections I had in my bladder wall prior to the Urostomy being done. My lungs are weaker than they should be and they get worse over time, making it hard for me to clear secretions from my chest and causing recurrent chest infections and the need for multiple daily nebulisers and a lung volume recruitment device. My liver is affected; my pancreas (I have chronic pancreatitis); my immune system doesn’t function properly; my autonomic nervous system is affected (this controls all the automatic functions of the body – heart rate, the unconscious control of breathing, blood pressure, temperature regulation and so on); and I have Osteoporosis, kyphoscoliosis and degenerative disease in my spine. I have had my condition all my life but no one ever joined the (many) dots when I was a young child, despite lots of contact with health professionals. I had physiotherapy from age 11 and the physio recognised something was seriously wrong. Age 14 my body gave up, I became a permanent wheelchair user, my organs began failing completely, I needed more and more intervention to survive, and wasn’t expected to reach adulthood. My team often say I am one of the most complex patients they care for, and among the most complex patients managed in the community. I have a Personal Health Budget through which I receive NHS funding and employ a team of registered nurses (RGNs) and personal care assistants (PAs) to manage my needs at home: every day I have 16 hours of care provided by the RGN, 8 hours overnight with a PA, and 6 hours 2:1 with a PA alongside the nurse. 

However, this blog has started for a somewhat different reason. My condition has changed, deteriorated, progressed, and I am struggling with infections we can’t get on top of. Since September 2020 things have gone drastically downhill. If you want to read more, go to this blog, https://www.lucyslight.co.uk/2021/02/06/how-did-we-get-here-21/. We are having to prepare for there being nothing else we can do, and if that’s the case, I won’t live long. My team are trying to investigate whether there are any other underlying conditions that could be causing this huge decline and incurable infections, and we’re hoping they’ll find something we can treat and return me to my work and quality of life. At the same time, we have to prepare for the worst, that there truly is nothing we can do and so I will be at the end of my life.

It’s this reason I started the blog. I want to give people an honest account of what living with a life-limiting condition is, and what the end of life period/process is like. I want people to learn from, be inspired and motivated by, and their perceptions challenged through me sharing my experience – in all its rawness, full of life, laughter, love, loss and everything in between.

This is not a death blog – it’s a narrative of life, death and everything in between. A story of a life well lived.

If you want to go to my work/business website, go to: